Writing my way out of a rut

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Cooling Off

A 10ft pool that should grow to be up to our waists. Skin sticky with a swirl of sweat and suncream. Ice cold hosepipe water pooling around my feet. Laying on a trampoline while we (the lovebirds and I) wait for the pool to fill. Laughter. Smiles. Sun.

A hug from sixth form friend’s mum.

“What’s that?” all eyes on Bob Jr.

“An insulin pump” I reply.

“And ooh what’s that thing on your arm?” At this, the sudden memory that there is a thing in my arm, and self consciousness as I feel everyone look at it.

“A continuous glucose monitor.” That familiar feeling where I squirm in my own skin, shy, embarrassed, wanting to hide from the things people stare at.

“I didn’t even know you were diabetic until the other day. You’d think you might have told us!” A playful smile, a nudge. My explanation that I’ve never classed type 1 diabetes as much of a health hiccup until recently I realised how many times it nearly killed me. Reliving memories of hiding it throughout my secondary school years. The time I told my football team and they all asked me when I was fat or why I had eaten too many sweets. Embarrassment. Awkwardness.

Joined by my fellow third wheel. The boys get in the pool first. Sixth form friend’s girlfriend and I tentatively hop in after. Bikini top. Swim shorts. Freezing water. Biting the bullet and quickly sitting down. Squeals. Laughter. Sunburn. Cans of beer and cider floating in the cool water beside us. The Norfolk four together again. Sat in the shape of a +.

Disconnected from Bob Jr. who beeps and vibrates like a bleating lamb separated from its mother and calling for all that it knows. 10cm of wire hanging from the white circle stuck to my stomach. All my scars showing. Reginald (the thing that lives in my chest)’s edge visible. Bloated because I forgot to take my diuretic for two days (and I ate bread yesterday). An assurance that my stomach is not big, from people who do not understand that there is usually a cliff at the bottom of my (usually hideously prominent) ribcage which falls to not a flat abdomen, but one that seems sucked inwards as far mine now looks puffed out – there is a gently hill up from my ribcage to where my ascites (fluid gathered in the abdomen) force my belly to stretch out to. Stomach and thighs bruised and lumpy from hundreds of injections (at least 12 a day). Self conscious. Exposed. But my fellow third wheel tells me not to be self conscious. He reassures me via message and then when he arrives he does the same before dismissing the issue, which forces my mind to view it as less of a problem and do the same.

Out of the pool when we can’t feel our legs any more. My fellow third wheel holds me steady while I climb out because I still can’t see properly and I have no idea what my numb legs are doing or how to really control them. Sunbathing on the trampoline again.

Summer brings out my inner-photographer. Actually, all seasons do. Photography is a passion of mine. Obviously this is just mucking about, but I do take it quite seriously. My camera used to go everywhere with me until medical stuff took its place more recently.

Home late. Happy. Cold shower. Dinner – food I bought myself – two chicken breasts in a chilli, lime and coriander marinade, with half a thingamajig of broccoli, a load of baby corn with a little melted butter on it, and a heap of mange tout. No gluten. Barely any carbohydrate apart from the corn. Happy gut. Dog cuddles. Changing the infusion set on Bob Jr. because the infusion site I’ve been using for 2 days is so saturated with a hard lump of insulin that it physically hurts with each teeny tiny (no longer absorbed) dose that is gradually and continuously pushed into me… And also the suncream and water have made the sticker TOTALLY NOT STICKY, and having the whole thing detached for so long made me worry about what may have wandered up the needle into the wire (all will be explained below the next image – I feel I need to contextualise this)

The aftermath of changing my insulin pump (Bob Jr.)’s giving set. He is, in this picture, reattached to me. At the top of the image, in the middle of a white circle (which is a sticker) is the needle. This part stays in me all the time and has a rubber bung in the end of it so it can’t leak when the rest of the giving set is detached. The longer squiggly wire underneath, just next to but not attached to Bob Jr. is the part which links the white circle component I just mentioned, to Bob Jr. It has a needle which pushes through the small rubber bung I mentioned above, so that when I disconnect it to do stuff like shower and sit in a pool, none of the outside world can get into me. The total length of these two components together is 65cm…

And somewhere amidst all of this… I invent a thing.

Yes, that’s right… I invented a thing. Genuinely. I found a practical solution to a problem that only diabetics will ever experience. I implemented this on myself, and it has worked brilliantly. I’m pretty amazed, I always wondered how people managed to think of new products and now I think it may be out of necessity. Anyway, it’s a tiny problem with such a simple fix that I can’t believe it doesn’t already exist (hey, knowing me it probably already does). The prototype is working brilliantly. I’m sensing a business idea here, it’s a niche market but a huge one! And I really think so many people will find it useful in solving a tiny little annoyance. Unfortunately, I have NO IDEA about the business world, just have a few ideas that will therefore never be…

But ideas that will be are also just as plentiful. I was already hoping to buy a 10ft pool for me and my dog (and I guess my family too) to sit around and cool off in. I’m now certain that I want to do this, and plan to buy one tomorrow; although I think I will coil a section of the hosepipe and place it in a bucket of freshly boiled water to take the bite out of the cold of the water. My little brother is already planning to invite a couple of our neighbours’ kids round to use the thing. I am the opposite of enthusiastic about this idea. I like my own personal space at the moment, emotionally I am fragile and socially I am… Incapable. But anyway, today I also ordered an inflatable lounger to use in the house (mum said no) garden (I will still sneak it into the house) so that I can read in comfort ANYWHERE without my family moaning that I’ve taken their place on the sofa or whatever. I’ve wanted one for ages.

There was a bit of an incident earlier today involving my spoiled little brother getting what he wanted (and what he wanted was MY food that I paid for. When I am living with my parents they ask that I buy my own food. On my student budget, I like to eat everything I buy. I separate all the food I buy into portions and plan how I will use it in specific meals, but he demanded a piece of my chicken while eating his own lunch, was very rude when I explained that it was already planned into part of a meal, ended up with my mum on his side, world war five, and a piece of my chicken on his plate) so by the time I left the house I a) very much needed to get out of it before I smashed up the place and lost my mind, and b) needed to cool off in more than a literal meaning of the term.

Shortly before I left, a blood glucose monitor turned up on our doorstep, thirsty for my blood (I am joking about the last part). I mean, I’m not going to turn down free medical equipment that I actually use… When my CGM (continuous glucose monitor) is dead (more on this in a second)… But this is the second time in two days that this particular company have sent me a machine to analyse levels of stuff in my blood. I’m never that lucky with stuff like that. It confuses me.

Coming back to the CGM thing. Yesterday I declared that my continuous glucose monitor scanner, Ralph, was useless and non-functional. Today, 24 hours after a replacement was purchased and the order in the stage of being processed… Ralph decided that his touch screen was going to work PERFECTLY, even if there is still a bunch of condensation behind the plastic or glass or whatever it is.

And now, on a final note, I’d like to introduce a series of posts I will be making at some point soon (probably all on the same day because hey, my brain seems to be all annoying like that, I apologise for it in advance!) about… I’m not sure they can be called bullies, because I don’t think their destruction was intentional… But two intelligent, kind, funny… (wait, why am I defending them to you, why am I too considerate of their feelings to call them) incredibly insensitive, ignorant and hurtful individuals who made my whole world fall apart with their words. For three years I have been hurting. I have carried the effects of their insensitivity, the machetes they took to my achilles heel. Now, I want to let it out, what they did to me. I need to. They’ll never read this blog but I need closure from all of this and I want other insensitive, misguided, ignorant people to realise what comments on health and other stuff that they don’t understand can do to the person their words are about. I want people who have experienced unkindness and misunderstanding like I have to feel less alone and more understood. And this isn’t just for insensitive idiots and the people whose lives they ruin, but also for the people who watch the aftermath, watch their friends fall apart, and don’t understand why they are “overreacting” or hurting so much… Or who think they understand the emotion, but have no idea what drives it. Most of all though… This is for me. This blog is my place to work things out and let them out and feel out loud. And I need to do all of those things right now, with this. I am finally ready. And it’s been a long time coming.

As always, no way but through.

(Sending good juju and hugs to an amazing little girl across the pond who, through her aunt’s emails and her mother’s blog, has astounded me with how incredible she is!)

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6 thoughts on “Cooling Off”

You are kind beyond words. My niece has an ostomy bag. Now that she has a kidney she produces urine. She was born without abladder so the urine must leave somehow. Surely there must be a designer that can create tops that work with all kinds of medical devices.

Nevertheless, the sun still shines and I am so happy you got out in it. Did I tell you Angel went in the water for the first time ever?